Dr Granpeesheh is executive director of CARD (Center for Autism and Related Disorders), a high-profile organization which provides ABA services. CARD has recently started a blog, which apparently has gotten rave reviews from leading Canadian autism advocates (you know where to find them...). Of the few CARD blog posts I read, two gave me déja vu.

As I briefly showed in a presentation this year, pieces of the MADSEC report have often been copied without attribution, including by behaviour analysts--a practice that continues up to the present. So it seems those frequently copied, but infrequently attributed, "30 years" and "several thousand published research studies" that have "documented the effectiveness of ABA" haven't budged an iota in a decade. The MADSEC report covers papers published up to 1998; among those "several thousand published research studies," which sadly are not listed, not one single RCT of ABA-based autism interventions is cited.

Failing to attribute copied chunks of text may result in applause from leading autism advocates, and for all I know it may be good for business. But in my view, if you are going to copy someone else's writing, and put it on your website or blog, it's a very good idea to provide the source for this writing rather than passing it off as your own. This is true even if copyright is not an issue, and even if you have permission to copy someone else's work.

(This brief note is more like a TMoB message, but the TMoB board has gotten cranky about posts with more than a few links. If I've made any factual errors, I hope someone corrects me.)

Monday, December 29, 2008

Here's a handful of interesting autism-related papers published in 2008, ranging across scales and subjects:

1. Autism and speech: Gernsbacher et al. (2008)

Why can't some autistic children speak? The remarkably few existing explanations for this high-profile phenomenon have collapsed under scrutiny. This embarrassing failure on the part of autism researchers was, at long last, addressed in 2008. Dr Gernsbacher and colleagues found "prominent associations among early oral- and manual-motor skills and later speech fluency" in a large sample of autistic children, who ranged from highly to minimally fluent. Early oral-motor skills are therefore crucial in explaining why some autistic children can't speak. What's more, associated manual-motor skills should be considered a confound in "assessing autistic cognition, receptive language, and ‘nonverbal’ social communication."

2. An effective intervention: Tyrer et al. (2008)

This was a multi-site RCT of three different interventions targeting "aggressive challenging behaviour" in intellectually disabled adults, a minority of whom were autistic. The authors found that haloperidol, risperidone, and placebo all resulted in rapid, dramatic and sustained decrease in the targeted behaviours. And while "no important differences between the treatments were recorded," after four weeks of treatment, "the greatest decrease was with placebo." The conclusion? "Antipsychotic drugs should no longer be regarded as an acceptable routine treatment for aggressive challenging behaviour in people with intellectual disability."

3. Absolute pitch for speech: Heaton et al. (2008)

In the past two years, Pamela Heaton and her colleagues have published a series of papers about enhanced perception of speech in autism. This case study goes a step farther in showing exceptional absolute pitch for speech in an autistic adult, AC, who has had little musical training. The authors found that "AC's naming of speech pitch was highly superior" compared with nonautistic controls who had absolute pitch--many of whom had extensive musical training. While delayed in his development of speech, AC had gone on to be competent in numerous languages. This calls into question the ubiquitous assumption that enhanced processing of perceptual aspects of speech in autistics can only be detrimental to what are regarded as much more important language abilities.

4. Unsung autism epidemiology: Williams et al. (2008)

Autism epidemiology tends to get a lot of media coverage, but this UK study, whose methodology resembles the much-publicized 2007 CDC epi studies, somehow got overlooked. Within "a large representative population sample" the authors found a prevalence of autism ranging from 51.5/10,000 (using more stringent standards) to 61.9/10,000 (using more relaxed standards). That's 1 in 194 to 1 in 162, strikingly lower than the 1 in 86 reported in a famous 2006 UK study involving a slightly older cohort. Within this sample, less than 15% were assessed to be in the range of intellectual disability, with this proportion falling to 13% for those with the specific diagnosis of autism (a higher rate, 27%, was found in those diagnosed with "atypical autism"). Also, having an autistic child was not associated with paternal age (a hot subject these days), and was only slightly associated with maternal age. Clearly, these are not the kinds of findings that attract the media, or autism advocates who produce press releases.

This paper gets both honourable and dishonourable mention. The study itself was a great idea, well-executed with important and fascinating findings. Autistics were shown to perform with enhanced logical consistency, avoiding irrational and irrelevant biases that distorted decision-making in their nonautistic controls. However, autistics' enhanced performance in this study was interpreted by the authors as a litany of autistic failures, imbalances, impairments, deficits, reduced capacities, weaknesses, and impoverishments (several invocations of some of these), none of which were actually found. The authors concluded that they have discovered a "core neurobiological deficit" in autistics. In years to come, we can look forward to interventions designed to overcome this core autistic deficit and to ensure that autistics become as irrational as nonautistics.

Saturday, December 20, 2008

Five papers published or epublished so far in 2008, along with a sixth which has sat in press all year, have in one way or another reviewed the ABA group designs, sometimes alongside other approaches to autism.

The solitary RCT (where the intended comparison between randomized groups was actually carried out) in the 47-year history of ABA-based autism interventions--a small, largely failed study--is now drowned in an enormous murk of systematic, quasi-systematic, and not-systematic-at-all reviews. At this point in autism and autism advocacy history, no one should be surprised that this phenomenon encompasses dueling meta-analyses.

As with every other Verbatim, providing quotes doesn't mean I agree with them or the papers they are situated in. Here are quotes from the conclusions of three of the 2008 reviews:

Intervention studies suffer from methodological problems that preclude definitive conclusions regarding their efficacy. [...] While this review suggests that Lovaas may improve some core symptoms of ASD compared to special education, these findings are based on pooling outcomes from a few, methodologically weak studies with few participants and relatively short-term follow-up. [...] Future studies on the effectiveness of these interventions need to be more rigorous.(Ospina et al., 2008)

Given the few RCT studies, the few models that have been tested, and the large differences in interventions that are being published, it is clear that the field is still very early in the process of determining what kinds of interventions are most efficacious in early autism, the variables that mediate and moderate treatment effects, and the degree of both short-term and long-term improvement that can be expected for an individual child.(Rogers & Vismara, 2008)

Currently there is inadequate evidence that ABI [applied behavioral intervention] has better outcomes than standard care for children with autism. Appropriately powered clinical trials with broader outcomes are required.(Spreckley & Boyd, in press)

Crisis creation has been one of autism advocacy's greatest achievements. Public policy is based on this crisis model of autism, in which virtually all autistics are young children who must be saved from the abyss of autismright now in order to save the future of society itself. Because the heroic effort to save autistic children from autism has been and continues to be costly (in many ways), public policy also now often encompasses the ideal that autism should be prevented.

In this autism-advocacy-created autism crisis, older autistics exist only in the future, as a looming danger to the public good. Unless there is funding for unlimited ABA, autism advocates threaten that an unprecedented epidemic of autistic children will grow up autistic--which means doomed (in fact, rotten), and large, violent and destructive, and institutionalized and horribly expensive. The fact that older autistics, the vast majority of whom have not been in ABA programs starting early in life, have not already destroyed the economy is just proof that wedon'tactuallyexist.

So one question is, when did autism advocates start this autism crisis? Or in other words, how long has this autism crisis been going on? I'd like to know. In a quick look-round, the earliest declaration of an autism crisis I found comes from Cure Autism Now. CAN claimed there was an autism crisis starting in 2000, or more than eight years ago:

"Today, autism is a national crisis affecting over 400,000 families and costing the nation over 13 billion dollars a year. According to recent studies, as many as 2 in every 1000 children born today will be on the autistic spectrum."

In the UK, the Guardian declared an autism crisis in 2002, and described autistic children as a "timebomb building in UK schools."

A "Canadian autism crisis" was declared by Autism Society Canada in 2001, or more than seven years ago. ASC has not at any time declared an end to this autism crisis. Indeed, in 2005 and 2006 this autism crisis was "growing" and currently, according to an ASC advisor (who cites a TV program, "The View," as his source), autism is definitely still a crisis.

CAN's successor, Autism Speaks, currently disseminates the claim that autism is "a national public health crisis" on every Autism Speaks press release (this one is about new Autism Speaks board members, none of whom is identified as autistic: autistics, autistics everywhere, and not a single autistic on the board, or anywhere else in Autism Speaks' leadership).

Testifying in the senate some time ago, I pointed out the obvious: autism advocates have been very successful in their perpetual autism crisis creation. So it is difficult to imagine any amount of resources and recognition that would satisfy autism advocates and their demand for a world as free of autism--of autistic people--as possible. It is unlikely that Canada or any other country has enough resources to meet the urgent and constant demands of autism advocates.

My wild guess is that so long as there are autism advocates, and so long as they dominate public policy and the public discourse about autism, there will continue to be an autism crisis. And this crisis--which is really an autism advocacy crisis--will continue to stand in the way of autistics having good outcomes.

Addendum: Many thanks to a reader who passed along some evidence that the autism crisis was first declared in 1999. See this, this, and this.

[Conflict of interest declaration: I'm affiliated with a research group which receives funding from Autism Speaks, among other funding sources.]

Monday, December 01, 2008

In this study, 106 autistic children (mean age 8.5yrs, range 3-14.2yrs) were receiving intensive (27-35hrs/wk) one-on-one ABA-based interventions (the ABA school group), while 51 children received "eclectic" non-ABA autism-specialized services (27-30hrs/wk; the ASD unit children).

Some of these children (109) were judged to be in various ranges of intellectual ability, but this information was gathered by questioning individuals who worked with the children and was not verified in any way. Similarly, there is no information about these children's diagnoses, beyond that they were "children with autism spectrum disorder," and for seven children, even their age was unknown.

All 157 autistic children's challenging behaviours were assessed through a version of the Behavior Problems Inventory (Rojahn et al., 2001; Murphy et al., in press, take their description of this instrument nearly verbatim from this earlier paper). This instrument involves interviewing informants (rather than direct observation) and divides challenging behaviours into three categories: stereotypy, self-injury, and aggression.

Regardless of the reasonable sample size, this study's authors chose to organize their data in ways that made many statistical comparisons useless. There is a clear trend, though, if you slog through what information they do provide. This is summarized in the discussion, about comparisons between children in the ABA school group and children in the non-ABA ASD unit group:

With regard to the type of intervention received being a risk factor, findings show that the type of intervention is not related to the prevalence of challenging behavior. However, in relation to participants receiving an ABA intervention, they displayed a higher frequency of stereotypy and also showed higher levels of aggression.

If I adhered to autism advocacy standards, I could simply repeat some or all of this excerpt endlessly as some kind of "proof" of what intensive ABA programs accomplish.

But the first sentence in the quote above is not supported by the authors' analyses. The other sentence is accurate in the sense that what is claimed can be traced to statistical comparisons that were actually carried out.

However, these statistical comparisons are within the context of a very poor quality study where the findings, even within the given highly questionable parameters (e.g., definitions of challenging behaviours that, among many other limitations, encompass presumed mental states) are virtually impossible to interpret.

Available data that might assist in interpreting the findings are simply not reported (e.g., demographics of the two different intervention groups). But even were the data better reported, this study is based on an very poorly characterized sample (poor characterization being the standard in the vast ABA literature), and one that according to what scant information is provided, is not representative of autistic children in general.

Indeed, an inventory of the errors (some of them instantly obvious) and major weaknesses in this paper would be lengthy and would include, somewhere down the list, the authors' contention that ABA must have been effective in their study in reducing challenging behaviours in autism because, well, ABA is effective.

This paper was accepted (within two days of being submitted) by an autism journal edited by a famous behaviour analyst. In my view, in its epublished form, this paper contributes nothing reliable or worthwhile to autism research.

What is worthwhile, though, is the reminder that quality and standards matter. The selective reading and promotion of research of overwhelmingly poor quality is central to autism advocacy--is one of its signatures. Autism advocates have successfully insisted that poor quality research is what autistics deserve.

But poor quality research can be selectively invoked to support any position, as I've pointed out here. For example, the low/no standards of science and ethics that autism advocates have imposed on autistics have led to public funding for RDI. But pushing poor standards and poor quality research is not going to lead to better outcomes for autistics. Claiming otherwise, as autism advocates loudly do, harms autistics.